Joshua’s Fight for Insulin Affordability

May 11, 2018

Joshua Davis was diagnosed with type 1 diabetes (T1D) when he was 11 months old. Now a 9-year-old, he doesn’t remember a time in his life without checking his blood sugar up to 10 times a day, changing his insulin pump, and fighting the highs and lows of T1D. Joshua’s dad, Brian, was diagnosed with T1D at age 28. They both started insulin pumps at the same time and both wear continuous glucose monitors. Joshua recently participated in the Special Diabetes Program-funded artificial pancreas project at the University of Virginia, a three-day camp where he was able to be very active without worrying about his blood sugar.

While Brian will tell you the Davis family is just like any other family that likes to play sports and go to the movies together, they have one significant difference: they spend an extra $3,500 every three months on insulin and other diabetes supplies that keep their two family members with T1D alive.

While insulin is not a cure for T1D, for Joshua and Brian, and thousands of other T1D families, it is life support. They are enrolled in a high deductible insurance plan through their employer that requires them to pay 100 percent up front until they meet their deductible, and then they are still responsible for a portion of the cost for the life-saving drugs and devices they need. In recent years, these out-of-pocket costs have increased, and become harder for the family to afford.

The Davis family has significant experience as JDRF advocates. Last month, Brian met with Eric Hargan, Deputy Secretary of the U.S. Department of Health and Human Services to advocate for changes that will make out-of-pocket costs for insulin lower and more predictable.

Today, the Davis family was thrilled to be invited to the White House to hear President Trump’s remarks on this important topic. JDRF’s Coverage2Control campaign advocates for drug rebates to be shared with patients to lower out of pocket costs, and we are glad the President’s Medicare plan includes this proposal. We appreciate that the Administration is making lowering drug costs a priority. It’s a challenge families like the Davises live with every day.

As Joshua said, “I have worked very hard to make living with type 1 diabetes a little easier, but I can’t do it all by myself.”

JDRF Fights Alongside the Davis Family for Insulin Affordability

Our work continues to advocate for reforms that make insulin available at a reasonable, predictable out-of-pocket cost. We are committed to working with all stakeholders to promote insulin access and innovation and have established a set of principles to address this topic head on.

In addition to calling on federal officials to take actions to address out-of-pocket costs of insulin, through our #Coverage2Control campaign, we are:

Calling on insurance companies to make meaningful, realistic actions that keep out-of-pocket costs for insulin predictable and reasonable, like passing on the drug savings they receive to members.

Urging manufacturers to do more to ensure affordable costs of insulin.

Developing online resources to help those with T1D navigate common insurance challenges, including financial resources to reduce the cost burden of managing T1D, and tips for advocating to employers to improve health plan benefits for those with T1D.

Funding research and encouraging company investment in development of better, faster-acting, next generation insulins to help people with T1D have even better outcomes.

Learn more about why insulin affordability matters and how you can join Joshua, the Davis family, and JDRF to fight for predictable and reasonable out-of-pocket insulin costs for people with T1D.